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» LymeNet Flash » Questions and Discussion » General Support » Can Lyme be cured?

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Author Topic: Can Lyme be cured?
helpforlyme07
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I keep reading over and over again that Lyme can be cured but none of the articles will say for sure. With the LLMD's not publishing who they are (I understand that a little as far as insurance politics).

We are calling around to get to see on for my 6 year old son. He has been to a pediatric rheumatoid specialist that treats Lyme disease and has been on antibiotics for over a month and just started his second round of antibiotics.

His symptoms were he was complaining his knee hurt and was very swollen (no black and blue) one day out of the blue. The pediatric Er took x-rays with no answers.

We went to his pediatric DR and his FIRST theory was Lyme and he ordered the tests - Good thing he did. Once we got back the confirmed test results we called around for Lyme specialists.

We found the rheumatoid specialist and the specialist spent allot of time with us explaining her examination and the basics of the test results.

the DR agreed he has Lyme and believe he got it 6-9 months ago do to the winter just passing and one of the tests showing a low reading stating an ongoing infection.

After a week of antibiotics his knee swelling reduced to almost normal but still swollen a little. He went back for a checkup last week and the DR stated both knees were a little swollen and his ankle is now swollen (I can only tell on the one knee).

The DR stated it may take some time for the swelling to go away even if the Lyme is stopped and that anti-inflammatory medicine may be needed to help reduce the swelling.

My son will not complain anymore as he is afraid of getting more needles so I do not know if his knees bother him. He is a very active boy and plays lots of sports and competitive ice hockey.

The DR says he can still play everything as he feels up to it and his knees don't bother him. He will not tell us if they are bothering him so we don't know.

What I want to know is can he be cured? Since the diagnosis is infection 6-9 months ago and not recent and is showing signs of Arthritic Lyme.

IgG test he is positive for:
93,66,58,45,41,39,28 and 18

IgM tests he is negative on all.

.................................................

Breaking up your text into a couple lines at a time for easier reading for many here. - Robin

[ 06-18-2014, 11:42 PM: Message edited by: Robin123 ]

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lostlyme
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Me personally I would watch and monitor any minor changes especially with school. There is a lot more to it than arthritic lyme.

Anything could set it off stress related , types of food .

As far as cured me personally I do not know , Remission yes ,I will know if I'm cured after few years .

But I still won't let my guard down as slowly as it came on . I don't want it to slowly creep back

I just do a little maintenance using supplements .

As what Tf says about dr b guidelines after 3 years symptom free is cured .

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Keebler
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You say about the pediatric rheumatologist: " . . .The DR stated it may take some time for the swelling to go away even if the Lyme is stopped and that anti-inflammatory medicine may be needed to help reduce the swelling. . . ."

This does NOT sound like a properly educated doctor, not a true LLMD. Seems like he's too ready to let go. There can be a lot of risk to just dropping actual treatment against lyme and going with anti-inflammatory action.

Be sure to avoid steroids. And acetaminophen and ibuprofen both have risks to glutathione in all cells, liver & kidney function.

Can you find a LLMD? A pediatric LLMD would be best, one who is ILADS "educated" in the best sense of that term.
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Keebler
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The doctor saying it's okay to go back to competitive ice hockey as long as the kid does not complain?

And, the doctor falls way sort here, too.

I say "sorry but no", I do not think it's okay to skate at all right now. It could cause permanent joint damage and if he falls, more that that.

Low impact, non-aerobic is best. And no stress on knees and ankles until the swelling goes down,

. . . but how that happens can be very tricky so even if your son does not complain . . .

With a competitive personality at age six, he will likely say he's "okay" just to play, even if he's not. It's not likely just the competitive action but the BELONGING. That drive can be tended in other ways, I hope. Even the competitive drive may have other avenues.

You don't want to scare him about the kinds of damage that can occur (or have him feel "punished" or "sick") but it is important to try to avoid tissue damage.

If you can connect with both an ILADS "educated" pediatric LLMD and your area lyme support groups to talk to other parents . . . you might get a wide range of other options for activity, I'd be sure to shift to safer activity options.
-

[ 06-18-2014, 09:35 PM: Message edited by: Keebler ]

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Keebler
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"Cured"? -- I do think it's possible to reach that level, at least of a good solid remission) but it could take 6 months or a year (or longer). It's not going to happen this summer, most likely. But he could be better, with the right care . . . and feel stronger along the way.

But all this must come as a shock. Sorry. Really. I think your current doctor has not been adequate for patient education.

Read the book "Cure Unknown" by Pamela Weintraub about what she, her husband and sons navigated toward periodic remissions lasting longer and longer.

Search: Pamela+Weintraub, lyme

and read all you can from her. She has many excellent articles._

See the documentary "Under Our Skin" - go to their website for viewing options.

Talk to other parents in a lyme support BEFORE you ever say another word to the current doctor. How you navigate that relationship is vitally important. Get advice from those who have gone before you with ILADS educated, actual LLMDs.

THIS part is really, really important. Be careful what you say to whom until you get more detail.

Also be very careful with how much reasoning and explaining you try to do with your son. At age 6, even if a competitive ice hockey player, his mouth could get ahead of him if asked about some things and that could boomerang back to you.

Lyme is very controversial and parents must fly under the radar. That also involves the kids' not necessarily know all the reasons for your decisions other than "what is best for now."

It may be best to not even mention the term "lyme" around him but talk about joint / tissue / health / science aspects of moving safely, etc.

This explains the caution. Not to frighten you, really. A recent case in Boston really brings this home now. If you go to a LLMD, you do not need to inform any other doctor you may have seen.

To help you navigate:

http://www.psychologytoday.com/articles/200708/munchausen-unusual-suspects

Munchausen - Unusual suspects (re: lyme, kids, parents)

Good luck.
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Keebler
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See this website:

https://sites.google.com/site/drjoneskids/home
-

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surprise
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Keebler, you are awesome!

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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poppy
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It is not clear to me how long the treatment will be with your current doc. Treatment meaning antibiotics. There is a window of opportunity with lyme when adequate length of time and doses may cure it. No one knows exactly how long that window is open. 6 to 9 months might or might not qualify.

But it would be really important to not quit too soon, because then the disease gets too entrenched and some people then can only hope for remission. Some aren't able to quit meds at all.

This would be an important reason to get to someone with more experience, to make sure of correct handling when there might still be a chance to get rid of it.

Ticks can give a person more than one type of germ and the same drugs do not work on all of them. There is some thought that if you take out the lyme early enough, the immune system might handle the others. Or not.

As you can see, this is a tricky situation without enough research and enough doctors who know it well and are allowed to practice without interference.

If you have noticed in the activism forum on lymenet, your state has been the subject of a campaign to allow doctors to treat in a way that helps more patients.

At the moment, without that law to protect doctors, there would not in future be many/any to treat lyme.

Even with the law, handling multiple infections in people who weren't diagnosed promptly will not be easy or popular as a field.

..............................................

Breaking up the text for easier reading for many here -

[ 06-18-2014, 11:44 PM: Message edited by: Robin123 ]

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poppy
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Keebler's suggestions on how to handle your current doctor are good. You do not want to antagonize this doctor, and don't have any obligation to explain how you will proceed now. Maybe take the antibiotics available there, and start looking for someone else to take over.

Because at some point, this doctor may say he has had enough treatment even with symptoms still evident or suggest steroids instead, and then you want to have someone else lined up.

And then depart quietly with no explanation. It would be good to get ready for that day, if it should come to that, by getting copies of any tests that have been done.

Just say you like to have a record of your own, for future reference and to document what has happened. Then you won't have to ask for records to be sent to another doctor.

..................................................

Please break up the text - thx - Robin

[ 06-18-2014, 11:45 PM: Message edited by: Robin123 ]

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helpforlyme07
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We have the lab results in hand. We are looking for a LLMD as well but it is looking like 3 months out now. Still calling around.

The current DR we are seeing has been good and informative. The current DR is not planning on stopping the meds for a long long time. So I guess this is good until we get more opinions from LLMD's.

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Keebler
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Be sure to learn about the various protocols -- and the combinations of Rx used to combat not just lyme but other TBD (tick borne diseases).

Now, while I emphasize being very careful with your current doctor in your plans to see a LLMD, it MIGHT be that you could work with him (still, do NOT share vital details about any LLMD).

He may have no leeway but, if he does, your being educated in all this is important so you know what questions to ask regarding:

what kind of combination Rx can be used to address ALL FORMS of lyme, not just the spirochetal form?

Has / Will . . . your son assessed for OTHER TBD?

Liver support is likely not something most MDs will know much about. Still, it's really important as it's also herx support. Many of the meds can be hard on the liver.

PROBIOTICS also are vital. I'll let others address that. NO processed sugars also really important. Dark berries, after a meal make a wonderful dessert. Best to keep to the dark berries and after a meal or, if a snack, with NUTS so as to balance that all out.

Nuts, themselves (if tolerated) can be a wonderful snack. Over 80 varieties. Be sure to buy raw (NOT roasted, never roasted until just before eating . . . otherwise the oils get old VERY fast, rancid and can damage our blood vessel walls).

If possible, it's possible to prevent systemic candida infections during treatment but it takes a direct approach.

Again, other parents in the area support groups may help guide you so that you learn how to approach a doctor who might be willing to help to whatever degree (?) . . . knowing when to ask, when to back away, etc.

If you have to wait for any time to see a LLMD, I do hope that the other doctor could help, somewhat. Just be fully aware that most doctors who are rheumatologists follow the neurologists who follow the IDSA guidelines for lyme --- and that means they are severely deficient.

But we WANT them to learn more - and that often starts with just one patient (or the one that finally flips the switch for them). Just don't equate friendliness or even their saying they are willing to help with competence. That can take a long time to work up to speed -- and most doctors are not ALLOWED to do that by their bosses, etc.

Still, there is the hope that yours may be one who wants to learn more. Also ask at all area lyme support groups who has had experience with this particular rheumatologist.

You need to know if you can trust his skill level, even while you wait for a LLMD appointment to open up. And, if later on, he can be counted on for certain base line help.

Good luck.
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[ 06-19-2014, 04:44 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. See the detail about children, too (regarding no acetaminophen).
-

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Keebler
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Doxycycline ? I assume since it is summer, this is not being used. If so, though, strict adherence to AVOIDING sun exposure really matters.

There are other choices yet if there might be ehrlichia, doxy at higher dose would be important. But it does not sound like your son has been assessed for other TBD at this time.

And certain drugs are not used in children. I'm not up on the specifics.

I know there's a lot of detail here to make your head spin like a Piñata. So just take a few breaths . . . and find some guides in the support groups within a broad radius to your home. Each will have a unique composition.

Just be sure the are ILADS 'minded' so on the right track. Humor, music, good real food and laughter will help you not jump the rails, too.

Changes in eating, etc. can be tied to "family" focusing on best nutrition, etc. rather than your son feeling the heat. He can go through some of this unaware that it's part of the plan.
-

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helpforlyme07
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Thanks.

He is on amoxycillin (for over a month now). Doxy is not for kids. I do not believe he was tested for other TBD yet.

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GretaM
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So sorry your son is suffering.

A non LL MD told me to keep playing competitive soccer when my joints were swollen.

I believed her, against my common judgement, and caused nerve damage in my legs.

after seeing a lyme literate doctor, I was told how cardio activity while infected with lyme is dangerous and does more harm than good.

I feel strongly now that only lyme literate doctors should be advising patients with tick borne illnesses.

So much damage to my body from listening to non lyme literate doctors.

I am relieved to hear the doc you have currently is willing to keep your son on abx until you can find a lyme literate doc.

It is very wise of you to ask more questions about tbds. You sounds like a nurturing, caring parent.

Bless you.
[group hug]

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KH111
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You are in NY, so I would call to get on Dr. H waiting/cancellation list. We went to him for our 10 year old right after he was bit. Make sure you have your son on 3 different abx that hits all three forms of lyme. Such as ceftin, Zithromax and pulse with tinidazole. Ask your current dr about this and try to get to a real LLMD as soon as you can. Also it is very important to get tested through Igenex for co-infections. Most likely he has a co-infection such as bartonella or babesia. My son had bartonella. The earlier you treat the better the outcome. Please pm me if you have any specific questions. I hope you are able to find a good LLMD and get the proper treatment. Do not give up, it is so very important to go and see an LLMD. I cannot stress the importance of this.
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helpforlyme07
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We found a LLMD we are going to see in a few weeks. The DR will retest and test for the other TBD's. We spoke over the phone and the DR said we will spend some time going over everything to try to get to the root of the infection type and treat it. The DR stated we are on the right meds for now until we rule out other TBD's or not.
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